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Coping with Chronic Illness in Children

Informing your child about his / her condition

Children handle and understand information about illnesses in different ways depending on their ages.

Below are some examples of age-appropriate ways to discuss medical conditions with your child. Remember that as children grow, their understanding of their illness needs to be reassessed.

Toddler / preschool

Children typically view illness as vague and magical. This age group needs simple, clear explanations such as, “You need to take medicine to help you stay strong and healthy.”

Kindergarten

Explain things to children of this age in simple terms. Using dolls, pictures books, and stuffed animals to explain illness can help children of this age.

Some children believe they have become ill because they have done something wrong. Reassuring children that illness was not caused by doing something bad can help children of this age.

Early school-age

At this age, children understand basic information about illnesses. They often fill in gaps in their understanding with their own ideas, so it is important to ask children questions about what they understand about their illness so that parents can correct misunderstandings.

Children tend to believe that germs cause all illnesses at this age, and frequently think that illnesses are contagious. Reassure children that others cannot “catch” their illness.

10 to 12 years

Around this age, children begin to understand how diseases are caused. They need more specific explanations of illnesses.

It is important to assess your child’s understanding of their illness and correct misunderstandings. Encourage them to ask questions, and answer their questions honestly in clear, basic terms.

Supporting a child with a chronic illness

Children and teens with chronic illness have different ways of viewing their illness, concerns, and feelings depending on their age. Parents may be surprised by what aspect of an illness is most difficult for their child.

For example, some children may be more upset about missing out on an activity they used to do than uncertainty about their survival, or a teen may be more worried about how a surgical procedure may affect their appearance than the risks associated with the surgery itself.

Below are some ways to support your child based on their age.

Children

Many children can feel embarrassed or isolated at school because of their illness. Helping your child practice a short script to answer questions from friends or classmates can help them to feel more comfortable at school.

Older school-aged children may refuse to cooperate in their treatment because they want to be “normal” or like other children. Involving them in their care, and giving them age-appropriate choices can help them handle their illness and cooperate with treatment.

Teens

During early adolescence, teens generally have an easier time participating in treatments because they feel that they are still under parental protection. By this age, teens should be taking on more responsibility for their day-to-day care.

During middle and late adolescence, teens begin viewing themselves as individuals and begin developing their own identity. Their friends become an important part of their identity and support. During this stage, many adolescents desire autonomy and want to take control over their treatment and management. This may result in difficulties in illness management when teens disagree with a treatment plan or find that it interferes with their social life.

Some of the most stressful aspects of living with a chronic illness in teens is developing and maintaining friendships, feeling normal, experiences at school, and their future. Involving teens in medical decisions and management plans as much as possible may help teens deal with stress and maximize treatment adherence during this stage. Identifying and building on a teen’s strengths may improve stress and help with adjusting to a chronic illness.

In late adolescence, teens should be encouraged to take on the responsibility of their illness. They should be encouraged to ask their own questions at appointments. They should be encouraged to take on self-management and decision making. By this stage, they should be able to make decisions about their care and perform day-to-day tasks of managing their condition.

Parenting a child with a chronic illness

Many parents alter their parenting when a child becomes ill. Parents may either become overprotective or overly permissive.

It is important for children with chronic illnesses to feel as much like a normal kid as possible. It is important to continue to have the same routine, rules, and activities as before their diagnosis. Children thrive with structure and may become confused if parents begin breaking their own rules or letting unwanted behaviors slide. It is also important not to limit activities unnecessarily.

Independence

Look for age-appropriate ways that your child can take more responsibility in the management of his/her illness and allow them to take on more responsibility as they grow.

Some families unintentionally foster dependency in their child because it is easier for the parent to manage things, or because they worry about their child taking on responsibilities. Some children may enjoy the special attention that they receive from a parent or caregiver who is managing their illness, and may be reluctant to take on more responsibility.

However, it is critical for their development, confidence, and future health to take on age-appropriate responsibility of caring for themselves. Taking on these responsibilities instills pride and confidence in children.

Self-management is especially important as children become teenagers. They should become more involved in management plans and emergency care plans with their doctors in preparation for their adult life.

Managing stress

Parents

Many families experience increased levels of stress when caring for a child with a chronic illness. One of the most stressful aspects may be a feeling of a lack of control over situations such as being unable to make your child feel better, or an uncertain prognosis.

It is important for parents to take care of themselves and manage their own stress in order to best help children manage their stress. Building a support system of family and friends who are able to help lighten your load can be very beneficial.

Continuing to pursue hobbies and other interests can also help both parents and children manage stress. Some parents may feel guilty about taking this time for themselves, but doing so will help both you and your child live a happier life.

Children

Many children with chronic illnesses deal with more stress than other children their age. They may feel stressed about missing school, falling behind in school, not being able to do things he/she used to do, having to go to hospital/clinic visits, changes in their appearance, and pain and soreness from procedures.

Frequently talking to children about their illness can be very helpful for them in the long run. When children know that talking about their illness isn’t bad or upsetting, they will be more likely to let you know when they’re sad, angry, worried, or have questions about their illness.

Children often feel most stressed by the changes that a chronic illness has on their everyday lives. Thinking ahead, and making plans to help children keep up with their school work and attend as many of their usual activities as possible can help children cope with their illness.

Children often experience anxiety about the unknown. Informing your child about their illness, upcoming doctor appointments, or procedures in an age-appropriate way can help them feel less stressed about the things ahead. Rehearsing or practicing what is going to happen can also help children to feel better about new situations.

At some hospitals, visits can also be arranged prior to a procedure or hospitalization so children know what to expect.

Allowing your child to have control over some piece of their health care can also help your child feel less stressed about a situation. Examples include:

  • Allowing him/her to choose which arm to have blood drawn from
  • Which day to schedule an appointment or procedure
  • What reward he/she will get for cooperating with an appointment or procedure.

If you have concerns about your child’s mood, behavior, or stress level, make an appointment with your pediatrician to address these concerns.

Dealing with procedures

Procedures and surgeries can be a stressful event for children and families. Preparation can help children feel more comfortable, have less anxiety, and cope better with procedures.

The type of preparation is different for different ages and are listed below. Scheduling time prior to a procedure for children to explore equipment, and walk through what will happen can make the procedure less scary.

It can also be helpful to make a plan for dealing with fear, pain, etc. prior to their procedure.

Things such as counting, listening to music, talking about non-procedure topics, and breathing techniques can help distract children and teens during procedures.

Distraction techniques can also help to decrease pain during procedures. Young children respond best to task-oriented distractors such as video games and tablets.

Infants

Bring familiar comfort items such as a blanket, pacifier or music.

Toddlers / preschoolers

This age group is often concerned about separation from caregivers, fear of the unknown, and loss of control.

Prepare the child 2 to 3 days prior to their procedure using simple language without too many details. Allow them to make age-appropriate choices leading up to and during procedures.

School-aged children

This age group is often concerned about pain, fear of their body looking different, fear of anesthesia, fear that they will not wake up from anesthesia, and fear that they will wake up in the middle of the procedure.

Prepare the child 1 to 2 weeks before their procedure. Explain what will happen before, during, and after the surgery/procedure.

Avoid using scary words such as “cut,” “incision,” and “shot.” Encourage questions and expressing fears.

Teens

This age group is most concerned about scarring, altering appearance, pain, fear that they will not wake up after the procedure, and fear that they will wake up in the middle of the procedure.

Allow them to hear about the surgery or procedure from their doctor. Include them in the plan of care and allow them to make choices and have some control.

Give complete, honest answers to questions. Allow them to discuss concerns with the medical staff.

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